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Postby risto » Mon Jul 23, 2018 10:16 am

My DW died on July 19, after living with stage IV colorectal cancer for just over 3 years.

Her last month went something like this: She had an inoperable malignant small bowel obstruction on June 18, had a venting g-tube placed, then had an infection in her pleural cavity for which she started IV antibiotics. We had an awesome suite in the palliative care ward and she had dozens of visitors coming through. She went home from the hospital on July 10, and had many more visitors there. She had internal bleeding starting around July 15, became jaundiced and started hospice on July 16. Due to fentanyl patch and other pain meds she was without pain but did have some panic attacks, and the ativan helped with that. She had some trouble breathing in her last day, when she lapsed into a coma and died in her sleep surrounded by love.

I feel traumatized by the death process even though she seemed mostly comfortable. There is something about being the caregiver and unable to stop the process as it unfolded before me that causes me to feel a strong sense of guilt about what I could have done better, though I know this is irrational.

She was my soulmate and guiding light for 22 years and I am beyond sad and missing her, but mostly I'm sad for her, and the living she missed out on, despite her life-long healthy lifestyle. She was only 44.
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury

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Location: SE Michigan USA

Re: Goodbye

Postby GrouseMan » Mon Jul 23, 2018 11:32 am


I fully understand - I had a similar experience with my wife who fought for about three weeks short of four years. My wife's end of life was not quite as traumatic as yours, as she had a blockage in May 2017 due to a peri met pushing against her colon, and we tried unsuccessfully to rectify that situation with a colostomy, and a stomach tube. She basically starved to death at the end because she could not absorb any nutrition. Pain killers and anti anxiety drugs administered here at home was the best we could do. Fortunately she was able to see many of her friends before she lapsed into unconsciousness. She passed away in the middle of the night June 4th 2017 just shy of her 57th birthday . A year out and I still do not spend time in our bedroom. I am in the slow process of remodeling it completely. It is very traumatizing to watch ones love waste away. It was particularly hard on me because I was an AntiCancer Drug discovery chemist for much of my career. I felt helpless. Just 6 weeks previous before she passed away, she had spent the weeks leading up to May ridding her horse judging a field trial and making the best she could of her time left. Many people that knew her were surprised as she didn't tell many, or let on that she was in decline. She was very strong. My one major problem is I don't have many pictures of her and our life together. She disliked having her picture taken.

Hang in there.

DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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Joined: Sat Aug 17, 2013 5:46 pm

Re: Goodbye

Postby stu » Mon Jul 23, 2018 1:01 pm

I moved to tears with the love you both have shown . I so wish we could ease pain for others but I am also pretty amazed at the wonderful love you both showed your partners . They were both surrounded by love .
Thinking of you both ,
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Joined: Fri Apr 06, 2018 11:40 am

Re: Goodbye

Postby boxhill » Mon Jul 23, 2018 2:10 pm

My condolences to both of you. One of the things that usually benefits those of us who have provided hospice care for a loved one is that we feel more of a sense of peace than others. When my father died at 85 of metastasized prostate cancer, my mother felt at peace, knowing that they had done everything they could together, and that she and I had provided the best end of life he could have had.

Please, try not to feel that there is something else you could have done. You gave her wonderful care and made her life as good as possible to the end.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key

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Joined: Thu Apr 19, 2018 5:59 pm

Re: Goodbye

Postby Capri » Mon Jul 23, 2018 2:34 pm

This is so heartbreaking to read both of your posts; I have tears in my eyes. God bless you both for the love and care you have shown to your wives.
I hope in time you will find peace knowing that you did everything you could for them in their final days. My deepest sympathies.
Mom to son 46 yo at Dx (2017)
11/17 sigmoid tumor found on colonoscopy
1/18 Robotic resection, Adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
10/18 Port removed
11/2/18 Clean colonoscopy; 11/20 CT normal.
3/2019 Abdominal CT normal
9/2019 Chest, abdomen, pelvis CTs "unremarkable".

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Location: Sonoma, CA

Re: Goodbye

Postby Shana » Mon Jul 23, 2018 7:08 pm

Your story breaks my heart. Wishing you peace, love and comfort in your memories.

The love your have for your wife will always be in your heart, I am so sorry for your loss
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...

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Location: Ontario

Re: Goodbye

Postby mobrouser » Mon Jul 23, 2018 8:19 pm

Risto, thank you for sharing your story with us.
I've read many of your posts. You did so much for your wife, there is nothing that you could have done better. You are truly an awesome husband.
My deepest sympathies to you and your family.
CC Dx 102017 age 58
Lap. right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX start Jan/18 end Aug/8 (felt like a year)
CEA - 01/15/18-2.8; 07/29/18-5.3; 09/19-2.4; 03/20-2.7; 09/20-2.9
CT scan 08/18 - Clear; 10/19 - Clear; * 10/20 - 8mm & 6mm nodules in liver
PET scan 09/18 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

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Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: Goodbye

Postby HopeForJesse » Mon Jul 23, 2018 9:30 pm

Thank you both for sharing your heartbreaking stories and yet loving stories. Wishing you peace in time. Hugs.
DH DX 01/16 49 YO inop RC stage IV liver mets
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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Location: Washington State

Re: Goodbye

Postby benben » Mon Jul 23, 2018 10:44 pm

Very sorry for the loss. I hope that you will feel comfort in your fond memories and the love you shared together.
Peace and love to you in this transition.
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

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Posts: 463
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Facebook Username: Robin.lawthers
Location: Florida

Re: Goodbye

Postby Robino1 » Tue Jul 24, 2018 3:29 am

My deepest condolences on your loss

I have no words
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Goodbye

Postby Deb m » Tue Jul 24, 2018 12:54 pm

So sorry for your loss. I watched my husband go thru his ordeal with colon cancer, but he survived. Now I am watching my father waste away literally from lung cancer. It's very difficult. Really, words can not express my sorrow for your loss. I pray that in time, you will look back and be able to cherish the good times and memories you have of her.

deb m

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Joined: Sun Aug 07, 2016 12:38 pm

Re: Goodbye

Postby Nextgen » Tue Jul 24, 2018 1:23 pm

Great love you both shown have motivate many of us.
I can feel the great pain & sorrow deep in your heart.
Sorry for your lost.
My mum 55yr on first diagnosis
Dx cc T3N2bM0 on Dec2011 CEA5.0, extended right hemicolectomy Dec2011, 12x Folfox CEA1.9,
Liver mets on Feb2014 CEA6.4, liver resection on May2014, 8x xeloda+cetuximab CEA2.8,
Colonoscopy Aug2016 NED
Jun2016 NED, CEA 1.8
Mar2018 NED
1.4 Nov2016
1.5 Mar2017
2.1 Jun2017
1.1 Aug2017
2.7 Nov2017
1.3 Dec2017
1.8 Mar2018
1.8 Jun2018
1.6 Oct2018
2.1 Feb2019
1.7 Jun2019
1.6 Oct2019
1.6 Dec2019
1.8 Mar2020
2.3 Jun2020
God have mercy, bless & save mum! Amen!

Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Goodbye

Postby teri3 » Tue Jul 24, 2018 7:24 pm

So sad to hear of your loss. Hopefully you're memories will keep her alive on your heart and soul.
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Goodbye

Postby WarriorSpouse » Wed Jul 25, 2018 5:06 am

I am sorry for your loss Risto. This battle is not easy for anyone involved. Your efforts as a caretaker to your wife were an example for all to follow. My thoughts and prayers are with you during this difficult time.
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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Location: PNW/USA

Re: Goodbye

Postby bitchslapped » Thu Jul 26, 2018 12:53 pm

risto wrote:I feel traumatized by the death process even though she seemed mostly comfortable. There is something about being the caregiver and unable to stop the process as it unfolded before me that causes me to feel a strong sense of guilt about what I could have done better, though I know this is irrational.

Not irrational @ all risto. Just the sense of loss & failure as a caregiver. I experienced it too: the woulda, coulda, shouda's set in along w/the feelings of helplessness all while being witness to the suffering, the decline. It really embeds itself in our hearts & brains, as it should, I guess. We caregivers are desperate for answers, help of any kind & the time comes the docs don't have any. Tough, really, really tough. My DH died 3 weeks after his 51st birthday, pain excruciating as liver was only able to process about 20% of the pain meds, until he finally went into a coma 4 days prior to death.

My deepest condolences to you for the loss of your DW. So many of us understand your grief.

DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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